My Journey through Perthes Disease

November 15, 2017

From The Heart Of A Father – Important Update on Elijah as he #tacklesperthes

I love movies, but only certain kinds. I’ve never been a superhero or sci-fi movie fan. Even as a kid, movies like: Star Wars, Superman, Batman never grabbed my attention and still don’t. I think mainly because they were so uninspiring to me, so predictable. I have always loved movies and stories about ordinary people who overcome extraordinary circumstances to achieve the impossible: Rocky vs. Apollo Creed, T.C. Williams Titans vs. segregation, William Wallace vs. England, even Happy Gilmore vs. Shooter McGavin. Maybe it was because I was aware of how ordinary I was and each character gave me hope that I could be something greater than what I saw in the mirror.

I remember the first time I saw the original Rocky, which happens to be one of my favorite movies of all time. I was forever transformed with the fearless underdog with courage to dream the impossible. As soon as the movie ended, I cracked 4 raw eggs, threw them in a cup and moments later threw them up. I loved his heart, guts, belief and most of all his overcoming attitude. When I read the Bible, that’s what sticks out most to me. Every great leader in scripture began an ordinary underdog with a call from God on their life, and who had to overcome major obstacles to live the life they were created for. Even Jesus himself came to earth as an ordinary man who overcame the greatest pain humanity could have handed Him and changed the world.

As a dad of 4 amazing kids, I am learning the greatest pain I can endure is seeing my children go through pain. When Elijah was diagnosed with Perthes 3 years ago, I was a glass half-full dad. I had the, “No Big Deal we will beat this and move on quickly” attitude. 3 years later, and I have discovered I was wrong. We have not beaten this disease, but I am even more certain this disease is not close to beating Elijah. I am like that 5 year old Shayne all over again watching Rocky for the first time, except I’m sitting ringside wishing I could take every punch and hold up his hands in victory. God recently whispered to my soul, “Shayne, if you took the punches, Elijah would forfeit the victory.”

In less than two weeks, Elijah will have his biggest surgery to date. One with no promised outcome, no guarantees, only hope. We have traveled the country, met with some of the best surgeons in the world and realize our medical options are limited. We are told there is no concrete data on this surgery, because they have really not seen many if any cases like his due to his age. Even with all of the setbacks, what I continue to watch now more than 3 years in, is a young man who continues to fight day after day and night after night. Most days people will say, “Elijah looks great,” but what people don’t see are the all too often nights he lies in bed crying because the pain in unbearable. When most people would throw in the towel (like me), he gets up and keeps forging ahead. Refusing to opt out on of football season in more ways than one was difficult, trying out for basketball knowing he would not even be able to play if he made it and then having to hear for the first time in his life he had been cut, waking up every morning early to go to show choir to sing and entertain in rehearsals knowing he won’t perform on stage this year. Why? Because quitting is the easy way, and he, on his own, chooses to keep fighting. Many days I feel like Adrian in Rocky 4 when she yells at Rocky, “Don’t fight, Because YOU CAN’T WIN!” Even when the doctor said, “Elijah every surgery you’ve had up to this point is a piece of cake in comparison.” He once again decided that on November 27th he will step into the ring to face an opponent that doctors say can’t be beaten. He’ll trade in his football and sports equipment for a wheelchair, walker, and crutches again.

I have finally changed my prayers for Elijah. It use to be, “God, get Eli back to what and who he once was,” Now my prayers are, “God, I trust you with his life, for a fight this big, use him in big ways. I just want your will for my boy.” My amazing wife, has fought just as hard. In some ways if Elijah is like Rocky, Tiffany is his Mickey. Always in his corner pulling the best out of him, and encouraging him like no other.

I will never rejoice in his pain, setbacks, and disappointments because it’s the hardest thing I have ever had to watch. However, I believe that God knew he could trust Elijah with this journey and he is going to be a greater man of God because of it. I no longer want God to get him back to what he was, I pray God gets him to a place that few will go; A life that inspires others, and will live a life that will change the world.

Most of the time you and I pray for God to take something painful away that He is trying to take us through. Every pain is a testing season in our life, we will either quit and settle, or discover God and prepare for the promotion in life that we are called to. I trust God more than ever that this test in Elijah’s life is the set up for a life never lived by average, that it is a life being trained for something BIGGER. GREATER. STRONGER.

John 16:33 – “….in this life you will have trouble, but TAKE HEART I have overcome the world.”

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6 thoughts on “From The Heart Of A Father – Important Update on Elijah as he #tacklesperthes”

So proud of Elijah for enduring the setbacks he’s had. We will pray that this surgery finally puts him in a good place so that he can get on with his teenage life. Sending our love & prayers for Elijah. Aunt Phyllis & Uncle Dave

Shayne, it is amazing the battle Elijah fights. My heart races and tears come when I think of these past 3 years your family have lived. Nevertheless, Christ is living in all of you and His glory is shining thru as you all face each day! You are all loved, and praise God for the powerful no quit Spirit living in Elijah!!!!

I know your pain all too well. Our son is 19 and has bilateral Perthes. Diagnosed at age 9, he was an active boy playing baseball, soccer, wrestling swimming and golf. He had a shelf procedure done and a couple of adductor tenotomies to improve his range of motion. He had to stop sports during several months of his recovery, but was able to resume them eventually. Resuming them did not come pain free but he learned to accept the pain and discomfort Perthes brings and it was worth it to him to be able to compete. At his current age, his ball joints have formed the best the dr thought they would considering he was older when diagnosed with the disease. He does have arthritis and some labrum issues that cause some pain. My son Cameron won the MD state championship his senior year of high school all living with Perthes. He was recruited to Clarion U, a division 1 wrestling program where he has competed many times last year. In my eyes, he beat Perthes by not allowing it to stop the sports he loves and by reaching a level most people don’t achieve, even without the disease. I Hope this gives you some hope as you move forward with your son. Prayers that your boy will be back to things he loves soon too!